Caregivers’ dirty little secrets

As I share my experiences of being a caregiver for my parents, I find myself constantly questioning how many personal details I should be revealing about my parents’ medical conditions. While common decency frowns upon TMI (Too Much Information), in the caregiving world, is there really ever such a thing?

For caregivers just starting out on a journey that may seem confusing and frightening, knowledge is power. As those who have been through it know, caregiving is messy by nature, and I’m not just referring to bodily fluids. It’s emotionally messy as well, and it is easy to become a bit numb to details of a disease that would shock a newcomer.

But the more I write and the more I read other caregivers’ stories, I realize shock and awe isn’t necessarily a bad thing. Americans need a wake-up call when it comes to the needs of a rapidly aging population. I read a very honest, poignant essay about a son taking care of his mother with Alzheimer’s, and how isolated and unsupported he felt, along with healthy skepticism of federal and state programs designed to help caregivers. He admitted that he was not one of those people who viewed caregiving as a privilege, but more as a necessity. Not everyone who feels this way would have the guts to admit this, but I can relate. This does not make him a bad person or a bad caregiver. It makes him human.

When I share the good, the bad and the downright ugly of my caregiving journey, it’s not intended to demean or denigrate my parents, who are no longer here to defend themselves or offer their side of the story. I’m opening up a window on my little family so that other caregivers can hopefully gain insight and perspective. Without reading about the experiences of other caregivers, I would have felt hopelessly lost.

How you share your caregiving experience with others is completely a personal decision between you and your family, and you should not feel pressured to divulge anything you are not comfortable in sharing. For some, sharing details about the caregiving experience is cathartic and valuable to others. You don’t need to reveal every grim detail with the world; sharing a rough day with a friend over coffee can also be healing.

Our connected world allows us to learn about a diverse array of caregiving experiences from people we will never meet in person. I’ve watched documentaries and read memoirs on everything from soldiers with PTSD (Of Men and War), to a young doctor dying from lung cancer (When Breath Becomes Air) to a young man with ALS (Hope for Steve.). While often emotionally difficult to experience, I always gain some insight into their daily lives, and how much effort it takes to strive for some sense of normalcy, both for the person with the medical condition and their caregivers. Normal becomes a fluid state of being, sometimes by the moment. I’m also moved by the resilience of humans, the love that we can express for one another even in our darkest moments, and the painful wounds, physical, emotional, and psychic, that so many people are silently enduring.

For me, sharing stories about my father standing naked in the shower, with a soapy head that looked like a foam turban, asking my mother, “What’s next?” is a meaningful share. Alzheimer’s moves at a different pace for every individual, but a breakdown in being able to complete simple tasks is a hallmark. While in the early stages, Dad could take a shower with just a reminder, by the middle stages, Dad needed help with each step of the process. By the time he was placed in a care center, he required help with all activities of daily living (ADLs) which proved too much for my mother to be able to handle by herself.

While I feel a pang of protectiveness at revealing such intimate details, I think it is important that people understand just how involved Alzheimer’s caregiving is for family members. While my dad was a private, modest person, in no way am I trying to mock him by sharing such stories.

The same goes for when he got into a physical altercation at the memory center when he wandered into another resident’s room and had a bowel movement on the floor. Certainly this is a humiliating episode, but not that uncommon for those with Alzheimer’s. My point in sharing such a story is to let people know that memory care center staff members cannot watch each resident 24/7, so family members need to be prepared for calls such as a resident has fallen, gotten into an altercation, or was caught in bed with another resident. These kinds of unfortunate events may make us cringe for our loved ones, but it is something that we need to be prepared to handle.

My mom’s illness, colon cancer, was physical in nature, and as anyone who has dealt with a colostomy bag can vouch for, things can get messy. One of my mom’s most memorable lines when she was recovering from colostomy surgery at the skilled nursing facility was when I asked her how she was doing and she said, “Well, I spent the night picking vegetable broth out of my crotch.”

Go ahead and laugh, I did.

Again, some might cringe at revealing such an intimate detail, but I think it’s important for people to understand that many skilled nursing facilities are understaffed and many are not trained on how to manage colostomy bags. My mother’s bag leaked after it was put on incorrectly, causing the spilled broth episode. Sadly, worse things happen in care centers, and the fact that my mother was with it mentally and in good enough spirits to crack a joke was reassuring.

So I will continue to share my “dirty little secrets” as a caregiver, in hopes of connecting with others going through similar circumstances. Sometimes, just learning that others are out there fighting the good fight can make a caregiver feel less isolated.

Photo credit: Stuart Whitmore/Morguefile

About Joy Johnston

Joy Johnston is an Atlanta-based digital journalist who began The Memories Project blog in 2012 after her father died of Alzheimer’s. Her essays have appeared in best-selling anthologies, including Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias.

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12 Comments

It’s daily life for caregivers. Many of us don’t share the less shiny side of the picture because those not involved may find it offensive. Diddums. Truth is it’s not all sunshine and roses and it’s in no way an easy role. Unless someone is actively in the role there is no possible way for them to understand what it actually entails.
The problem with caregivers holding back the gruesome details is that it gives the impression to the outside world that it is easier than it really is. When the fact is it is an exhausting, non stop, often gross, and emotionally destroying journey. The fact that it comes from a place of pure love is what makes it bearable.

“Regular” people living life outside of caregiving don’t have a clue. Although, I believe their genuine concern is there most of the time, no one wants to hear the details and I also try to keep in mind how my loved one would feel of me telling others. Overall, no “dirty little secrets” in any way, tough role and most people would never step up to the plate. God Bless is all and may we survive.

Thanks for this lovely post, Joy. I was my mother’s caregiver for almost seven years before she died. She did not have Alzheimers, but was a very difficult person. I thought I was going mad at the time because I felt so alone. Those caring for their parents or children need to know that they are not alone and that there are thousands of people out there having the same difficulties and the same feelings of exhaustion and often wanting to give up. Your words are extremely important. Thank you!